Measuring Autistic Adults’ Healthcare Self-Efficacy, Visit Preparedness, and Use of Accommodations

Background: Autistic adults report greater unmet healthcare needs, lower satisfaction with patient-provider communication, and greater barriers to healthcare than non-autistic adults. Qualitative data suggest that potential interventions to improve healthcare outcomes may work by helping patients prepare for visits, increasing their self-efficacy in managing their health and healthcare, and ensuring that they receive the accommodations they need. However, there are no validated instruments for measuring such constructs.

Objectives: Develop and psychometrically test three new scales: the Confidence in Managing Health and Healthcare Scale (CMHHS), the Visit Preparedness Scale (VPS), and the Provider and Staff Use of Accommodations Scale (PSUAS).

Methods: We used a community-based participatory research approach throughout the project, in partnership with academic researchers, autistic adults, family members, and healthcare providers. We used our prior qualitative research to create the 21-item CMHHS, the 6-item VPS, and the 8-item PSUAS. Each scale has two versions – one for use with autistic adults directly, and another for supporters. We collaborated with community partners to ensure content validity. This analysis used baseline data from an ongoing study to assess the effectiveness of a primary care intervention on healthcare outcomes for autistic adults. We administered the baseline survey online or the telephone to 244 autistic adults recruited from 8 primary care clinics in Oregon and California, USA. All participants had medical diagnoses on the autism spectrum. Among them, 194 participated directly, and 50 participated via a supporter. Participants had a mean age of 30 years (range 18-72); 70% were male; and 62% were non-Hispanic white. Thirty-nine percent often or always, 24% sometimes, and 38% rarely or never needed assistance in healthcare settings. Thirty-eight percent reported a co-occurring chronic physical health condition, and 61% reported a co-occurring mental health condition. We assessed the scales’ internal consistency reliability using Cronbach’s alpha, and convergent validity using pair-wise correlations and t-tests.

Results: Community partners ensured that items were easy to understand and captured the intended construct. Both versions of all three scales had good to excellent internal consistency reliability, with alphas ranging from 0.81 to 0.96. The scales showed convergent validity in the expected directions. Participants who reported unmet healthcare needs had lower confidence in managing their health and healthcare (p= 0.0002), felt less prepared for healthcare visits (p=0.006), and were less likely to receive necessary accommodations (p=0.0001). There were strong positive correlations between satisfaction with patient-provider communication and healthcare self-efficacy (r=0.47, p<0.0001); visit preparedness (r=0.55, p<0.0001); and use of accommodations (r=0.52 p<0.0001). There were negative correlations between barriers to healthcare and healthcare self-efficacy (r=-0.53, p<0.0001); visit preparedness (r=-0.44; p<0.0001); and use of accommodations (-0.32; p<0.0001).

Conclusions: The three new measures demonstrated strong internal consistency reliability and convergent validity with unmet healthcare needs, satisfaction with patient-provider communication, and barriers to care. Future research is needed to validate these scales in additional populations, to assess whether interventions improve healthcare outcomes, and to test whether they do so via these hypothesized mechanisms of action.